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Thread: pberggren memorial thread

  1. #121
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    Quote Originally Posted by Alysia View Post
    If anyone has the private phone or email of dr. Specks please pm me asap. Thx.b
    I don't know how Phil emailed him in the past.

    I had to call his secretary and explain what had happened since my last visit with him two weeks ago and the questions I had for him. She gave me her email address and offered to forward my questions on to him. I thought I could email him on the Mayo site like I can for U of MN Fairview clinic but couldn't find any link. I can download his last report and lab results but saw no way to contact him through my Mayo account.

    He still has not responded to my questions so I wonder if he might be away from the office since I have heard he is usually rather prompt about responding to such questions. If my situation was an emergency I believe one of his colleagues would also respond if he was not available

    I think his nurse might respond to any questions if you can reach hr through their regular phone line for their department.
    Last edited by drz; 09-22-2014 at 02:18 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #122
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    I have been off the forum for about 2 weeks and missed a lot of this. And, for some reason, I can't read the first page of this thread. Only the 2nd page comes up for me, but its enough to figure out what is going on. I sure feel bad for Phil and Alysia. It must be awfully frustrating for Alysia to be in Israel and so many miles away. Like everyone esle, I wish there was something I could do. I am only 500 miles away from Calgary, so if there is something you think I could do for you, Alysia, please let me know.

  3. #123
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    vdub, yes, you have missed a lot. Alysia is currently in Calgary, at Phil's bedside, as he goes through plasma exchange. This is her second trip from Israel to there within the last 3 months or so, both extended stays. Maybe you knew about the first one. Unfortunately for some forum readers, more info is often shared on Facebook than the forum lately, probably because Phil and Alysia have many friends and family there who are not forum members.
    Anne, dx'ed April 2011

  4. #124
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  5. #125
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    Alysia, I agree with Sangye, please try to hit every specialist you can until you can get the information you need. I am praying for both of you...I am glad you are able to be there with Phil through this.
    ~ Bob

  6. #126
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    Alysia, I don't know you since I've been off the forum for awhile, so maybe you're able to summon the tiger in you already, I don't know. But if not, you must get in the doctors' faces and demand that a Wegs specialist be contacted asap. Don't accept any excuses, no "We're trying the plasmapheresis and then we'll see" nonsense that often happens. I've lost too many friends in this group to doctors being in over their heads. Even the Wegs specialists consult with each other. Thank you for being at his side to make sure he has everything he needs.

  7. #127
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    I agree with Sangye. I know Phil thinks his docs are quite competent, and maybe they are. But the more feedback you can get from any top WG specialists, the better. Not just ones listed in Canada on the CanVasc site, but any of the top ones that we have all heard of on here. I know you were trying to reach Dr. Specks and he seems like a good choice, since he has expertise in lung issues. But if nothing is happening there, then there are others you could contact. I should think any of them would be willing to have a say in this extreme and dire case. I should think Phil's docs already know who these top specialists are and could be making an effort to consult with them, saving you a lot of footwork when you are so stressed out. But if they aren't making that effort, or don't think they need to, what alternatives are there but to be proactive? It is easy for me to say, because I would no doubt be such a wimp in this situation. I cannot fathom how you must feel right now, with lack of sleep, probably not eating, and so stressed and afraid that you can barely make a decision. You are probably a stronger person than I would be, though.

    drz, I have gotten the feeling in the past that Phil might have met Dr. Specks, at which point he could have been given his email address. I also think Phil may have given it to Cindy, who may have shared it in a PM on Facebook. Those are only impressions floating in my memory, and they could be wrong. But I know Phil has done a lot of networking with WG docs and patients, and it's possible that Dr. Specks would at least recognize Phil's name. I think your suggestion to try calling his nurse is a good one. It does seem like any attempt to get top specialists involved here is likely to take time and be convoluted. So if Dr. Specks indeed knows Phil or remembers him, it seems a quicker response might be forthcoming, although it hasn't been yet.... And he is a lung specialist. But some input from some top WG rheumatologists would also be a very good thing! I, for one, am concerned about whether he is getting the most effective meds in the right amounts for this urgent situation, if in fact they know for sure it is WG causing the inflammation.
    Anne, dx'ed April 2011

  8. #128
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    Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #129
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    Quote Originally Posted by Alysia View Post
    Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.
    Hi Alysia,
    Don't worry about him skipping a day of plasma exchange. I only had it twice a week for 4 weeks (if I remember correctly).

    Thanks for the updates. As you know I tend to "disappear" for a while and then become more active on this forum. I'll certainly be hanging around, praying for Phil's recovery.
    Diagnosed April 1995

  10. #130
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    Hi Alysia

    As already said do not worry about them skipping a day, my son had his plasmapheresis in blocks of five days.

    Rif

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